Hello! I’m Hannah and I’m nine years old.

My mummy says she’s never met anyone who embraces life like I do.

…but it seems my life wasn’t destined to be an easy one.

You see, when I was born I had to stay in hospital for a few weeks.  The doctors said that I had small arms, hands and feet, a cleft palate and hardly any chin.  Then they found out that I had 2 holes in my heart and another heart defect and I wasn’t able to feed like all the other babies.  Every few days I had to have a tube inserted up my nose and into my tummy so that I could be fed.  I was wired up to lots of monitors too.

Mummy and Daddy were really shocked that I had all these problems. They were heartbroken that they couldn’t take me home and look after me like all the other new parents were doing. Their lives had been turned upside down.

This wasn’t what they’d anticipated for me!

I underwent a range of tests and scans and had a trip to another hospital in an ambulance to have my heart examined. I also saw a Professor of Genetics who diagnosed me with Cornelia de Lange Syndrome.  No one could accurately predict how my syndrome would affect me, but mummy and daddy knew that it had very serious physical and developmental implications.

…and it was a very scary time!

Cornelia de Lange Syndrome (or CdLS) is classed as a Rare Disease and is caused by a single genetic change affecting a single gene in each individual. It’s very rare and it’s estimated that between 1 in 10,000 to 1 in 25,000 people have CdLS. It took 7 years to determine which gene had changed and mine affects only 5% of individuals who have CdLS – so that’s REALLY rare! and there’s still lots more to be learned about it.

Even as a baby ‘the experts’ freely speculated all kinds of things that I wouldn’t be able to do…and being subjected to that guesswork was so difficult for mummy and daddy to endure. But they believed in me.

I have global developmental delay which means that I’m not developing in all aspects like other average children my age. Even at 2 years old, I couldn’t sit up on my own or feed myself. And despite having a range of professionals involved, there was no-one providing me with the support I desperately needed. So, as time passed and anxious to find the right help for me, mummy reached out to Rainbow House in Mawdesley.

In 2011 I began weekly Conductive Education sessions there and, alongside those sessions, it’s become a lifeline for us and other children, young people and their families.

Rainbow House offered my mummy and daddy hope that I could try to learn to develop new skills like walking and feeding myself.  There are only a few places in the UK which offer this particular type of intervention and it isn’t available on the NHS.

I’ve endured a lot over the years. I had a post-operative respiratory arrest and had to be resuscitated. Mummy and daddy were with me when it happened and they thought they were going to lose me.   I still have a residual cleft palate because my mouth was damaged. I’ve also been treated for meningitis. Life hasn’t been easy!

CdLS affects me in SO many ways (far too much to mention here) and it pretty much all aspects of my life; I’m non-verbal (although my mummy did hear me say ‘hello’ once…which she says was ‘magical’); I have hearing loss, I have profound learning difficulties and huge problems with communication; I have self-harming behaviours and GERD. I often have to wear a protective helmet because I fall over quite a lot and AFO’s to try and correct the bones in my feet and ankles that affect my mobility. Oh, and if that isn’t enough to cope with, I have autism too and so I see and interact with the world differently to you.

But you know what? At my own pace and with a LOT of hard work, I’m trying hard to learn new things.

It’s safe to say, that I’ve already endured more than many people go through in a lifetime, but despite all the challenges life throws at me, I still manage to smile and enjoy life!

It’s an incredible thing the team behind ‘12 mountains in 12 months’ are doing, and by supporting them, you’ll be contributing to supporting me and other children with additional challenges climb our own individual ‘mountains’ – whether that be being able to hold our head up or feed ourselves or walk – or any of the things that many people just take for granted for themselves and, perhaps, for their own children too.

Thank you so much for your support.

…let’s go climb some mountains!

Love

Hannah xxx

p.s. If you’d like to learn more about CdLS or come with us on our journey, you can find us on Facebook or at www.mykidlovesbroccoli.wordpress.com

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